Evidence map›Paper›PMID 33757975›Full record

Trial reportOpen heart2021

Patient information portal for congenital aortic and pulmonary valve disease: a stepped-wedge cluster randomised trial.

Jonathan R G Etnel, Lidia R Bons, Frederiek De Heer, Daniëlle Robbers-Visser, Ingrid M Van Beynum, Bart Straver, Monique Rm Jongbloed, Philippine Kiès, Martijn G Slieker, Arie P J Van Dijk and 12 more

Abstract readMulticenter StudyRandomized Controlled Trial
In one paragraph

Trial report in Open heart, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. The Dutch Implantable Cardioverter-Defibrillator Decision Aid in Clinical Practice: A Stepped-Wedge Randomized Controlled Trial.Medical decision making : an international journal of the Society for Medical Decision Making · 2026
    Trial
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

22 authors.

Jonathan R G EtnelDepartment of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands j.etnel@erasmusmc.nl.ORCID 0000-0002-3960-8035
Lidia R BonsDepartment of Cardiology, Erasmus University Medical Center, Rotterdam, Netherlands.
Frederiek De HeerDepartment of Cardiothoracic Surgery, Academic Medical Center, Amsterdam, Netherlands.
Daniëlle Robbers-VisserDepartment of Cardiology, Academic Medical Center, Amsterdam, Netherlands.
Ingrid M Van BeynumDepartment of Pediatric Cardiology, Erasmus University Medical Center, Rotterdam, Netherlands.
Bart StraverDepartment of Pediatric Cardiology, Academic Medical Center, Amsterdam, Netherlands.
Monique Rm JongbloedDepartment of Cardiology, Leiden University Medical Center, Leiden, Netherlands.
Philippine KièsDepartment of Cardiology, Leiden University Medical Center, Leiden, Netherlands.
Martijn G SliekerDepartment of Pediatric Cardiology, Radboudumc, Nijmegen, Netherlands.
Arie P J Van DijkDepartment of Cardiology, Radboudumc, Nijmegen, Netherlands.
Jolanda KluinDepartment of Cardiothoracic Surgery, Academic Medical Center, Amsterdam, Netherlands.
Robin A BertelsDepartment of Pediatric Cardiology, Leiden University Medical Center, Leiden, Netherlands.ORCID 0000-0002-9179-7953
Elisabeth M W J UtensDepartment of Child and Adolescent Psychiatry/Psychology, Erasmus University Medical Center, Rotterdam, Netherlands.
Regina TheZorgKeuzeLab, Delft, Netherlands.
Eugene Van GalenPatient Association 'Patiëntenvereniging Aangeboren Hartafwijkingen', Maarssen, Netherlands.
Barbara J M MulderDepartment of Cardiology, Academic Medical Center, Amsterdam, Netherlands.
Nico A BlomDepartment of Pediatric Cardiology, Leiden University Medical Center, Leiden, Netherlands.
Mark G HazekampDepartment of Cardiothoracic Surgery, Leiden University Medical Center, Leiden, Netherlands.
Jolien W Roos-HesselinkDepartment of Cardiology, Erasmus University Medical Center, Rotterdam, Netherlands.ORCID 0000-0002-6770-3830
Willem A HelbingDepartment of Pediatric Cardiology, Erasmus University Medical Center, Rotterdam, Netherlands.
Ad J J C BogersDepartment of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands.
Johanna J M TakkenbergDepartment of Cardiothoracic Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundIn response to an increased need for patient information in congenital heart disease, we previously developed an online, evidence-based information portal for patients with congenital aortic and pulmonary valve disease. To assess its effectiveness, a stepped-wedge cluster randomised trial was conducted.

methodsAdult patients and caregivers of paediatric patients with congenital aortic and/or pulmonary valve disease and/or tetralogy of Fallot who visited the outpatient clinic at any of the four participating centres in the Netherlands between 1 March 2016-1 July 2017 were prospectively included. The intervention (information portal) was introduced in the outpatient clinic according to a stepped-wedge randomised design. One month after outpatient clinic visit, each participant completed a questionnaire on disease-specific knowledge, anxiety, depression, mental quality of life, involvement and opinion/attitude concerning patient information and involvement.

results343 participants were included (221 control, 122 intervention). Cardiac diagnosis (p=0.873), educational level (p=0.153) and sex (p=0.603) were comparable between the two groups. All outcomes were comparable between groups in the intention-to-treat analyses. However, only 51.6% of subjects in the intervention group (n=63) reported actually visiting the portal. Among these subjects (as-treated), disease-specific knowledge (p=0.041) and mental health (p=0.039) were significantly better than in control subjects, while other baseline and outcome variables were comparable.

conclusionEven after being invited by their cardiologists, only half of the participants actually visited the information portal. Only in those participants that actually visited the portal, knowledge of disease and mental health were significantly better. This underlines the importance of effective implementation of online evidence-based patient information portals in clinical practice.

Indexed as

Aortic ValvePulmonary ValveQuality of LifeAdolescentAdultCaregiversFemaleHeart Valve DiseasesHumansMaleMorbidityNetherlandsPatient PortalsSurveys and QuestionnairesYoung Adultclinical trialscongenital heart diseasequality of care and outcomes

Identifiers

PMID33757975
PMCPMC7993296

What OpenQuestion holds

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LicenceCC BY-NC
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.